Tracking Symptoms for Chronic Illness

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One of the things that drives me up the wall the most about Lyme is how my symptoms are constantly changing over time. It seems like I’ve just gotten used to one thing and then another thing pops up. Many of my neurological symptoms, such as increased irritability and depression, were things I didn’t even know to attribute to the disease until I learned more about Lyme, and started noticing patterns in my own behavior.

In the beginning, I kept telling myself that I’d be better in a couple weeks, and didn’t make any real long-term investments in trying to tackle this disease. Now that it’s clear it’s a much longer road, I’ve been trying to arm myself as well as possible for the battle, and that includes having a good knowledge of ALL of my symptoms, and when they decide to appear.

As an analyst by trade, I know that the more data you have, the easier it is to diagnose a problem. So in 2017 I’ve made a real effort to keep on top of tracking my symptoms. This is the approach that works for me, and I hope it’ll help some of you out there as well.

1) I take a note of any symptom that appears throughout the day on my phone. My phone is always with me, and it’s easy to take a quick note, wherever I happen to be. I try to make the notes as detailed as possible, so there is no question what type of symptom I am describing. When you live with symptoms for a while, you begin to notice differences within the symptom, and I think it is important to have as much detail as possible. I also note if I am suspicious that certain foods or activities caused certain symptoms, and anything that relieved my symptoms.

I keep a long running list of all of my symptoms, day after day, in my Notes app. Some might prefer to use a Calendar or another app, but Notes are easily searchable and shareable, so it works well for me.

2) At the end of the week, I look back at all of the symptoms I logged over the week, and I use a Google Sheet that I created to organize them. Here’s an overview of the sheet, before I go into details.


There are 3 main components to this sheet:

A) Symptoms – Basically a running list of everything I jotted down in my Notes app that week.

B) Symptom Groups – My effort to make sense and group all of the different symptoms I’ve been experiencing. Allows you to see what groups of symptoms bother you most often.

C) Dates – Every day that I experienced that symptom, it gets an x.

So, it’s pretty simple. I was using numbers to rate the intensity of the symptom on each day before, but that got too complicated so I simplified it. It didn’t take long to put together, and now I have quantitative data on the number of symptoms I’ve been experiencing over time, and how often each symptom is experienced. While the more detailed information is found in the daily log, this sheet provides a good overview of what’s going on, and shows month over month how I’m doing. Each month I print it out and have an easy visual snapshot of what happened that month. Especially because Lyme is so cyclical, this has been really helpful.

I know it might seem like a lot for those of you experiencing brain fog and extreme fatigue, but it really is pretty simple to set up, and logging this information has made me feel like I have a lot more control over this disease. Control is a rare thing these days!

Please feel free to send me questions, I’d love to help.

Have you found any success in tracking your symptoms? What programs do you use that help you organize this information? 

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